Many of those who think they might be autistic don’t feel the need to gain a formal diagnosis – some might be in denial, many are confident in self-diagnosis, and others just don’t care for labels. That’s fine. For them.
The Need to Know
For the rest of us, however, the Need To Know becomes a driving force, eating away at our self-confidence, our self-worth, and often our mental health too: the answer to The Question forever waits just round the corner, frustratingly out of reach: do I have Asperger’s? Many of us suffer years of having the doubt lurk in our heads like a bad dream – maybe I am, maybe I’m not – before plucking up the courage to visit our doctors.
Other people don’t get it
We find we daydream about how we’ll feel when we finally know, and then fall into despair at the prospect of the answer being “no” – a cycle that might repeat itself many times a day. It doesn’t help when those around us tell us we’re attention seeking, or just “obsessed with Asperger’s” (as though no one with a lump obsesses about cancer… der), or – for those who have already suffered a litany of misdiagnoses (depression, bipolar, psychosis, etc.) – we’re gently asked if we’ve considered the possibility we might have Münchausen’s syndrome. Yep, thanks for that.
You know yourself better than anyone else. Have faith in your own convictions.
But it’s all so confusing…
So as we tie ourselves in knots trying to work out what to do for the best, still the voice keeps talking: “If I admit to wanting a diagnosis, that will make me act more autistic to convince the doctor. I could research more about it, but then I won’t know if I’m being me, or just the autistic people I’ve read about, and someone’s bound to notice, and I’ll be called out as a fake. Maybe I am a fake. Maybe I am just attention seeking. Maybe I am just a failure.”
And so it goes on.
What if I’m not autistic?
But the truth is, if you can strongly relate to the experiences of autistic people, and have similar stories of your own to tell, then you are very likely autistic too, and you should have confidence in that comparison. Just like if you have a sore throat and a runny nose, you know you’re not making up your symptoms just so you can say you have a cold. You can’t fake them (any more than you can make your nose run), and you can’t hide them (ever tried to hide a runny nose?!). To a diagnosing psychologist, your autism will be obvious too.
It’s OKAY to do the Research!
Reading up on Asperger’s is not going to make you autistic if you aren’t already. Instead, it will offer some extremely important self-awareness that will help you, whether or not you go on to seek a diagnosis. I didn’t do any reading (I saw it as cheating), but I wish I had – because I went to my doctor without any real knowledge, or evidence for my suspicions, and with nothing to counteract his prejudice that grown women can’t have autism (yes, seriously). Then, when he said “don’t you think you might be just a little bit depressed?” I was crushed, because I knew he’d made up his mind: another neurotic middle-aged woman. It took another eighteen months for me to pluck up the courage to try again.
So Where do I Start?
If you are in the UK, you have two routes to diagnosis: NHS and private. The NHS route is free, of course, but the waiting list can be up to a year long, depending on your area. The private route is expensive (£500+) but you might well be seen within weeks, or even days. And don’t even begin to think a diagnosis won’t count if you pay for it. It will.
If you opt for the NHS, the first step (in the UK) is to visit your GP. If you have a choice, I recommend you ask to see a younger doctor – as they are more up to speed with adult autism in my experience. Take with you a) a written list of your symptoms, and b) a supportive friend or family member (who also believes in your autism). Be prepared, also, to explain why you want a diagnosis; we have heard of numerous cases of people being told that, as there is no support for adults, there is no benefit to being diagnosed. In my humble opinion, this is not for a doctor to decide. So, explain to him/her what the benefits will be for you. You cannot insist on a referral, but if s/he agrees to refer you, you can chose to be referred to an autism specialist. If s/he refuses to refer you, don’t give up – go home, do some more research, rewrite your notes, and get a second opinion. (See the “Your Right to Chose” page page on the NHS Choices website.)
If you opt for a private diagnosis, the National Autistic Society website is a good place to start.
Finally, however long you’ve had to wait, Assessment Day arrives. You wake, and you worry: about how you should present yourself, whether or not you should try to make eye-contact, whether you will appear autistic enough… Try to stop worrying. I won’t say ‘just be yourself’, because I know many of us have lost sight of who we really are by this point, so just relax and let yourself be whoever you happen to be on the day. The psychologist will be prepared for you to be stressed, nervous, anxious, terrified to the point of stupor, mute… whatever. They’ve seen it all before. For what it’s worth, I sat through a 2-hour interview for my assessment, but my psychologist later told me she’d worked out I was autistic within three minutes of my arrival. They can tell, so – really – try not to worry.
The assessment itself
The assessment itself may vary, depending on who you see, but it’s likely to involve an interview of some kind, probably quite a long one (mine was two hours) – it’s okay to ask for a break if you need it. You will probably be asked a series of questions about your childhood, your friendships/relationships, any awareness you have of sensory issues (aversion or attraction to particular noises, lights, tastes, textures, etc.), your hobbies (including whether or not you are obsessive about them), your routines, your work, and so on – anything that is likely to reveal symptoms. So start thinking now, and making notes about memories that seemed odd at the time, or times when you felt you didn’t fit in, or ways in which other people think you’re ‘odd’ or any autistic traits you can relate to (e.g. I didn’t own a vacuum cleaner for years – I couldn’t stand the noise – and would sweep all my carpets with a stiff brush and a dustpan).
This kind of preparation is not cheating. It will help the psychologist.
Finally, after perhaps years of wondering, the conclusion is delivered…
to be continued… “After the Diagnosis” coming soon.
» Think you might have Asperger’s syndrome?”
» Asperger’s in Women
» Bullying & Abuse
» Symptoms of Asperger’s syndrome (from an aspie perspective)
» The Triad of Impairments (in real terms)
» Diagnosis Stories
» Online Tests